Now that CFSAC's over, what should we do?

I'm not sure how many people are still involved, engaged, or interested, in what we are doing here.

And I'm not sure how many people are happy with the way the process is going, because there's not been very much feedback. So I'm not sure if that means people are happy with the way it's going, or have just disengaged.

So I'm not sure if I'm using my energy in a worthwhile project...

For those of you still engaged in this process, could you please give this post a 'like'? Or leave any comments.

1a. An independent panel of Diagnostic experts will be created to write a 100% complete differential diagnosis list of all other diseases that can cause the symptoms of ME and CFS, they will write a step by step easy to follow guide on how to rule out all the other diseases and all the tests that are needed to do this.Drs Byron Hyde and Dr Shirwan A Mirza because of their track record in finding the misdiagnosed patients in the CFS group must be included in this panel either directly or as consultants.

1b. It will then become compulsory for all patients who have suspected CFS or ME or have already been diagnosed with CFS or ME, to have the testing recommended in the guide that is created by this independent panel.

Object: No thanks. Who pays for this "compulsory testing", and why would I want to subject myself to that? Over 20 years I've been tested, retested, and then tested again. I'm waiting for a biomarker before I submit to more tests.

2a. A new definition will be created, that will be based on independently replicated science, the new definition will be based on the patients having had all the testing to rule out all other diseases, using the differential diagnosis list and testing requirements that will have been created when article 1a has been accomplished.

A review of the medical literature must be done, to compile a list of all physical anomalies that have been found in CFS and ME patients, such as SPECT, PET, MRI scans, NK cells, RNase L, VO2 max, POTs, NMH etc, etc. Tests for all anomalies will be performed in a replicated manner on all the patients in all the groups. From this information a new definition will be written, or two definitions, if it found to be two different illnesses. And a new name/names for the illness/illnesses will then be created based on the scientific findings.

2b. Adequate Funding will then be provided to further research patients that fit the definition/definitions created by this process to find diagnostic tests, causes and treatments.

2c. The CFSAC and the Patient Community will be regularly updated on the progress of this project and the details of it.

Object: No thanks. Again, after 20 years of hashing and rehashing the name, I could care less what they call it. CFS is a diagnosis here in the US that is gaining some recognition and folks are getting social security and medical benefits based on that diagnosis. The name sucks, but until there's a biomarker or some breakthrough research/treatment, it's the very least of our problems. Again with the mandatory testing? A very nice consensus paper was written by a world-wide group of specialists, research and clinical, summarizing the physical findings in ME/CFS and recommending a name change to ME. Do we think we can do better than that. Do we have to reinvent the wheel. I would suggest that paper (which I'm too pooped to look for now) be used as a starting point for these discussions.

3a. All CFS and ME patients in the USA will be officially recognized as having a serious Physical illness until such time as the science in sections 2a and 2b has been done and the answer to what this illness/illnesses is has been found.

3b All US CFS and ME patients will be given the legal, medical and insurance rights that other patients with a serious Physical illness have.

This is already the case. In order to gain benefits, you have to show you are unable to work no matter what your illness. When I was applying for Social Security back in the 90s, people with AIDS were being denied. Regardless of your diagnosis, you may or may not be able to work and that's what has to be shown. It's not easy for anyone whether their diagnosis is considered serious physical or mental illness.

3c. The CDC will write on its website that CFS and ME are serious physical illness, until such time as the science in articles 2a and 2b has been done.

4. CFSAC should recommend that the CDC add myalgic encephalomyelitis (ME), as defined by the ME-ICC and classified by the WHO, to its list of diseases.

Why? I don't get the debate around this. Again, when biomarkers are found, whether there are distinct disease entities or not will be shown. I don't want to spend time on this.

Alternative 4:
4i. That, consistent with its statement that “ME is accompanied by neurologic and muscular signs and has a case definition distinct from that of CFS,” the CDC should recognize the ME-ICC and its predecessor, the Canadian Consensus Criteria, as case definitions for ME, distinguishing ME (ICC/CCC) from CFS (Reeves, Fukuda).

5. More research funding for the biomedical model of illness, using CCC and ICC alongside Fukuda for all research, until such time as the new definition based on replicated science is completed.

Alternative 5:
5i. More research funding for the biomedical model of illness, using CCC and ICC for all research, until such time as a new definition based on replicated science is created.

6. Research trials be carried out into Rituximab, and related pharmaceuticals, with these researchers communicating with Drs Fluge and Mella to help coordinate the research and provide details of how they select patients for trials.

I think any recommendation that dictates specific researchers is not going to gain consensus or carry any weight. Jennifer would know the answer to that question. But it's my thought that this is outside the charter of the CFSAC.

7. CBT can be an optional therapy for CFS patients, to help with the emotional issues of having a physical illness, and GET should be removed from CDC literature, toolkit and website.

Alternative 7:
7i. CBT to assist coping can be an optional therapy for CFS patients but not for the purpose of modifying hypothesized dysfunctional illness beliefs, and GET should be removed from CDC literature, toolkit and website.

The most strongly advanced recommendation at the CFSAC meeting was to REMOVE the toolkit and widely distribute the primer. We should support that recommendation.

8. The CDC should remove all information from their website based on CF/idiopathic fatigue (Oxford and 'Empirical' studies) or meta-analyses and review articles conflating CF/idiopathic fatigue with ME/CFS.
(should we be more specific about this and provide specific information about what we want removing, or at least examples?)

Alternative 8:
8i. "The CDC should remove all information from the CDC's CFS website, CDC's CFS literature, & CFS toolkit, that is based on CF/idiopathic fatigue (Oxford and 'Empirical' studies) or meta-analyses and review articles conflating CF/idiopathic fatigue with ME/CFS."
(should we be more specific about this and provide specific information about what we want removing, or at least examples?)

9. The CFSAC should review all their previous recommendations for clarity, utility, redundancy, and applicability. Based on this review, and a review of responses received from the Assistant Secretary and Secretary (if any), and the requests we outline, the CFSAC should re-issue.

Alternative 9:
9i. The CFSAC should review all their previous recommendations for clarity, utility, redundancy, and applicability. Based on this review, and a review of responses received from the Assistant Secretary and Secretary (if any), the CFSAC should re-issue recommendations that address current priorities in ME/CFS policy in a clear and concise manner.

9ii. The CFSAC should review all their previous recommendations for clarity, utility, redundancy, and applicability. Based on this review, and a review of responses received from the Assistant Secretary and Secretary (if any), and the requests we outline, the CFSAC should re-issue recommendations that address current priorities in ME/CFS policy in a clear and concise manner.

4. CFSAC should recommend that the CDC add myalgic encephalomyelitis (ME), as defined by the ME-ICC and classified by the WHO, to its list of diseases.
Alternative 4:
4i. That, consistent with its statement that “ME is accompanied by neurologic and muscular signs and has a case definition distinct from that of CFS,” the CDC should recognize the ME-ICC and its predecessor, the Canadian Consensus Criteria, as case definitions for ME, distinguishing ME (ICC/CCC) from CFS (Reeves, Fukuda).

Click to expand...

I understand and agree with the intent of this recommendation but struggle with the specific wording for a few reasons...

While the CDC does contain that language on its website, we know that in practice, U.S. patients with ME (ICC or CCC) are given the label CFS. In fact, at the NCHS meeting on reclassifying CFS to neurological diseases, the audience was asked whether they had ever seen the term ME used and everyone shook their heads no.

We also know that the CFSAC Nov 2011 recommendation stated that CFS should be kept with ME and PVFS in the neurological category (which is where WHO ICD-10 has it). They also said that current evidence indicates greater similarities across the three than differences. The problem with the language on the CDC web site about ME is that it almost implies that CFS is not neurological, something that the WHO disagrees with

Fukuda itself, back in 1994 stated that patients would need to be subsetted. That has not been done

FInally, for everything that ICC does to explicitly state that ME patients defined by ME-ICC should be removed from patient populations defined by the NICE criteria and Reeves empirical criteria, it was silent on how to handle patients diagnosed by Fukuda. I wish I knew why

Therefore, rather than saying ME should be distinguished from CFS, how about stating something like

"Given that Fukuda states that subtyping is required and that Fukuda fails to acknowledge the hallmark PEM/PENE, patients that meet the ME-ICC or CCC should be removed from the Fukuda defined patient population and referred to as ME."​

Regarding the patients that are "left over" in the Fukuda patient population, I don't know what to call them since I don't know what kind of patients they are. But I think that if that group is given the "CFS" label by default, it will not help us and only continue the confusion we have today. Ideally, I think we want CFS to be retired, not casually assigned to a new patient population.

I lose track but I am assuming that there is a recommendation that states that the empirical definition needs to be retired and it doesn't need to be stated here. If wrong, perhaps we could have a separate one for that?

The only loose thread in my mind is why the ME-ICC didn't take this step. Again, I really wish I had some insight into the reason for that.

1b. It will then become compulsory for all patients who have suspected CFS or ME or have already been diagnosed with CFS or ME, to have the testing recommended in the guide that is created by this independent panel.

Object: No thanks. Who pays for this "compulsory testing", and why would I want to subject myself to that? Over 20 years I've been tested, retested, and then tested again. I'm waiting for a biomarker before I submit to more tests.

Click to expand...

CJB: How about something along the lines of: it should be compulsory for doctors to offer all patients full testing?

7. CBT can be an optional therapy for CFS patients, to help with the emotional issues of having a physical illness, and GET should be removed from CDC literature, toolkit and website.

Alternative 7:
7i. CBT to assist coping can be an optional therapy for CFS patients but not for the purpose of modifying hypothesized dysfunctional illness beliefs, and GET should be removed from CDC literature, toolkit and website.

The most strongly advanced recommendation at the CFSAC meeting was to REMOVE the toolkit and widely distribute the primer. We should support that recommendation.

Click to expand...

CJB Agreed. The consensus seems to be to get rid of CBT and GET. So I've deleted items 7 and 7i, and offered an alternative suggestion.

6. Research trials be carried out into Rituximab, and related pharmaceuticals, with these researchers communicating with Drs Fluge and Mella to help coordinate the research and provide details of how they select patients for trials.

I think any recommendation that dictates specific researchers is not going to gain consensus or carry any weight. Jennifer would know the answer to that question. But it's my thought that this is outside the charter of the CFSAC.

4. CFSAC should recommend that the CDC add myalgic encephalomyelitis (ME), as defined by the ME-ICC and classified by the WHO, to its list of diseases.

Why? I don't get the debate around this. Again, when biomarkers are found, whether there are distinct disease entities or not will be shown. I don't want to spend time on this.

Alternative 4:
4i. That, consistent with its statement that “ME is accompanied by neurologic and muscular signs and has a case definition distinct from that of CFS,” the CDC should recognize the ME-ICC and its predecessor, the Canadian Consensus Criteria, as case definitions for ME, distinguishing ME (ICC/CCC) from CFS (Reeves, Fukuda).

Click to expand...

CJB
OK, I'll delete 4, because no one was happy with it.
What about the alternative 4i? Do you object to that?

3a. All CFS and ME patients in the USA will be officially recognized as having a serious Physical illness until such time as the science in sections 2a and 2b has been done and the answer to what this illness/illnesses is has been found.

3b All US CFS and ME patients will be given the legal, medical and insurance rights that other patients with a serious Physical illness have.

This is already the case. In order to gain benefits, you have to show you are unable to work no matter what your illness. When I was applying for Social Security back in the 90s, people with AIDS were being denied. Regardless of your diagnosis, you may or may not be able to work and that's what has to be shown. It's not easy for anyone whether their diagnosis is considered serious physical or mental illness.

Click to expand...

CJB Are you just referring to 3b?
I'm not familiar with US social security.
Can others please comment on CJB's comments here.
Would others agree that there's no point in including 3b?
Or should it be reworded?

CJB: How about something along the lines of: it should be compulsory for doctors to offer all patients full testing?

Click to expand...

Can we point to any other illness where this is so? The primer contains great information in the latest tools to dx ME/CFS. I think that is sufficient. Any request that compels doctors to do anything is going to go down in flames IMO.

Bob,
I suggested some alternative wording to 4i but am also fine with just removing it for the reason CJB gave on 4. As I said in the post, there are loose threads that make this one challenging to take a position on

2a. A new definition will be created, that will be based on independently replicated science, the new definition will be based on the patients having had all the testing to rule out all other diseases, using the differential diagnosis list and testing requirements that will have been created when article 1a has been accomplished.

A review of the medical literature must be done, to compile a list of all physical anomalies that have been found in CFS and ME patients, such as SPECT, PET, MRI scans, NK cells, RNase L, VO2 max, POTs, NMH etc, etc. Tests for all anomalies will be performed in a replicated manner on all the patients in all the groups. From this information a new definition will be written, or two definitions, if it found to be two different illnesses. And a new name/names for the illness/illnesses will then be created based on the scientific findings.

2b. Adequate Funding will then be provided to further research patients that fit the definition/definitions created by this process to find diagnostic tests, causes and treatments.

2c. The CFSAC and the Patient Community will be regularly updated on the progress of this project and the details of it.

Object: No thanks. Again, after 20 years of hashing and rehashing the name, I could care less what they call it. CFS is a diagnosis here in the US that is gaining some recognition and folks are getting social security and medical benefits based on that diagnosis. The name sucks, but until there's a biomarker or some breakthrough research/treatment, it's the very least of our problems. Again with the mandatory testing? A very nice consensus paper was written by a world-wide group of specialists, research and clinical, summarizing the physical findings in ME/CFS and recommending a name change to ME. Do we think we can do better than that. Do we have to reinvent the wheel. I would suggest that paper (which I'm too pooped to look for now) be used as a starting point for these discussions.

Click to expand...

CJB Are you objecting to the whole of item 2 (2a, 2b, 2c), or just the bit that mentions a new name (highlighted in red)?

Can we point to any other illness where this is so? The primer contains great information in the latest tools to dx ME/CFS. I think that is sufficient. Any request that compels doctors to do anything is going to go down in flames IMO.

Click to expand...

Agreed. So if we remove the meaning from 'compulsory', to 'advisory', would you be ok with that, or not?

CJB Are you just referring to 3b?
I'm not familiar with US social security.
Can others please comment on CJB's comments here.
Would others agree that there's no point in including 3b?
Or should it be reworded?

Click to expand...

Yes, 3b. In order to qualify for Social Security Disability (SSD), you have to have "proof" that you're unable to work. That's the bottom line. It doesn't matter what your diagnosis is. There are many here who have ME/CFS but are still able to work. Their illness is serious, they have a valid diagnosis, but they wouldn't qualify for benefits.

Therefore, rather than saying ME should be distinguished from CFS, how about stating something like

"Given that Fukuda states that subtyping is required and that Fukuda fails to acknowledge the hallmark PEM/PENE, patients that meet the ME-ICC or CCC should be removed from the Fukuda defined patient population and referred to as ME."​

Regarding the patients that are "left over" in the Fukuda patient population, I don't know what to call them since I don't know what kind of patients they are. But I think that if that group is given the "CFS" label by default, it will not help us and only continue the confusion we have today. Ideally, I think we want CFS to be retired, not casually assigned to a new patient population.

I lose track but I am assuming that there is a recommendation that states that the empirical definition needs to be retired and it doesn't need to be stated here. If wrong, perhaps we could have a separate one for that?

The only loose thread in my mind is why the ME-ICC didn't take this step. Again, I really wish I had some insight into the reason for that.

Click to expand...

I think we might have provisionally scrapped the recommendation re Empirical definition, for various reasons. I lose track as well.

This whole area is a mine-field, and it's not going to be widely accepted that ME and CFS are separated clinically.

I suggest we all focus purely on research recommendations. (i.e. using ICC for research.)

So I propose not including anything that involves separating ME from CFS, for reasons that have discussed throughout this thread, except for research purposes.

Bob,
I suggested some alternative wording to 4i but am also fine with just removing it for the reason CJB gave on 4. As I said in the post, there are loose threads that make this one challenging to take a position on

Yes, 3b. In order to qualify for Social Security Disability (SSD), you have to have "proof" that you're unable to work. That's the bottom line. It doesn't matter what your diagnosis is. There are many here who have ME/CFS but are still able to work. Their illness is serious, they have a valid diagnosis, but they wouldn't qualify for benefits.

Click to expand...

Would it not help patients to have some sort of recommendation that CFS patients are treated as if they have a biomedical illness rather than a psychiatric illness?

This is all covered in the primer, so I would want the whole thing stricken.

Click to expand...

Hi CJB, we have discussed this in detail earlier in the thread, and discussed the reasons for including items 2.
We are not saying that the ICC is unhelpful, but the CDC is working on a new criteria and name anyway.
So items no. 2 address their work.
So I'd appreciate it if you could address the discussion before we scrap all items 2.
Unfortunately, you might have to read through some of rlc's mammoth posts, so I'm sorry about that.

On the mandatory testing point, again, we could change 'mandatory testing', to doctors being 'advised' to do testing.

Would it not help patients to have some sort of recommendation that CFS patients are treated as if they have a biomedical illness rather than a psychiatric illness?

Click to expand...

We can't dictate human behavior or suggest how one should be treated IMO. We just need to put forth the evidence that already exists to refute any notion that ME/CFS is psychogenic. The science is there. We need to get the CDC website changed to reflect that reality. For starters.

Hi CJB, we have discussed this in detail earlier in the thread, and discussed the reasons for including items 2.
We are not saying that the ICC is unhelpful, but the CDC is working on a new criteria and name anyway.
So items no. 2 address their work.
So I'd appreciate it if you could address the discussion before we scrap all items 2.
Unfortunately, you might have to read through some of rlc's mammoth posts, so I'm sorry about that.

Click to expand...

Tee hee!! With all due respect to rlc, I haven't been able to read much of what he's written. I'll go back and review the discussion. But it will have to be a little later.

Bob, you know I think this is a very worthwhile discussion and it's been a bit - circular - I guess, but we need to keep talking. Thanks for hanging in there.

We can't dictate human behavior or suggest how one should be treated IMO. We just need to put forth the evidence that already exists to refute any notion that ME/CFS is psychogenic. The science is there. We need to get the CDC website changed to reflect that reality. For starters.

Click to expand...

We have suggestions re changing the CDC website.

I don't see why the CDC couldn't make it clear on their website, and in literature, and in advise to doctors and insurance companies, that CFS should be treated as a biomedical illness, and not as a psychiatric illness.

I don't think that's about dictating human behaviour, but it's about presenting the facts.

Would you not be happy with that sort of suggestion?

(Maybe we would need better/alternative wording - all the wording is provisional at the moment - the important thing is to discuss the ideas, as well as getting the best wording in place.)